1. < Osteoporosis & Bone Health

My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

betsee | @betsee | Jul 25, 2023
In reply to @debcco "I finished my Evenity shots last month (April). The only side effect I had was stiffness..." + (show)
@debcco

I finished my Evenity shots last month (April). The only side effect I had was stiffness in the joints after a couple of months but it went away. This week I had both my Reclast infusion and a bone scan. I felt a bit fluish for a day and a half after the infusion and then felt fine. The results of the scan were better than I expected. The spine and total hip measurements moved me from osteoporosis to osteopenia. The femoral neck measurement went from osteopenia to normal. Overall, I am very glad I went through the process. A lot of people have reported very bad side effects so I count myself lucky. I hope others have the same positive results.

Jump to this post

Hello,
How soon after 12th Evenity did you receive Reclast infusion?

Doctor recommended Prolia, so I reached out to prior doctor in another state for his insight.

After reviewing by labs and DEXA, he had a preference for Reclast. After a bit of procrastination on my part, and a message through the patient portal, I am on track for Reclast. Just couldn’t get beyond the bone resorption of Prolia, should it need to be discontinued.

Now I want to get some info on timeframe for infusion. Hydration and Tylenol seem to be mentioned quite a bit on this site.

Thank you for any info you can provide.

REPLY
2 replies
sal462 | @sal462 | Jul 25, 2023
In reply to @debcco "I did have Reclast following Evenity, a full dose. I was quite stressed about getting Reclast..." + (show)
@debcco

I did have Reclast following Evenity, a full dose. I was quite stressed about getting Reclast because of all the bad reactions that people reported on this site. I have an autoimmune disease that reacts very badly to stress and had terrible stomach trouble for almost 4 weeks after the infusion. Don't know if it was the infusion itself or the stress that caused the problem. I have no intention of getting another Reclast infusion. The endocrinologist told me that osteoporosis is very much a genetic issue. Also, my autoimmune disease is a contributor. Despite these facts, the risk of more bad side effects are now outweighing the rewards in my mind. I will step up my exercise routine to include free weights and hope that will be enough to maintain the good bone growth that Evenity produced.

Jump to this post

I hope that weights work for you. I am still trying to avoid Evenity altogether ( much to my doctor’s dismay) because I can’t see a future free of various dental procedures & the jaw necrosis risk plus the black box about the heart attacks just freaked me out. So I most of the time do some weights, maybe not enough but I am good about wearing a weighted vest while walking or other exercises. I think mine is the NYK one. It at least gives hope. I hate that they want us to take all these drugs.

REPLY
2 replies
windyshores | @windyshores | Jul 25, 2023
In reply to @betsee "Hello, How soon after 12th Evenity did you receive Reclast infusion? Doctor recommended Prolia, so I..." + (show)
@betsee

Hello,
How soon after 12th Evenity did you receive Reclast infusion?

Doctor recommended Prolia, so I reached out to prior doctor in another state for his insight.

After reviewing by labs and DEXA, he had a preference for Reclast. After a bit of procrastination on my part, and a message through the patient portal, I am on track for Reclast. Just couldn’t get beyond the bone resorption of Prolia, should it need to be discontinued.

Now I want to get some info on timeframe for infusion. Hydration and Tylenol seem to be mentioned quite a bit on this site.

Thank you for any info you can provide.

Jump to this post

@betsee sounds like the doctor in another state is a good doc! I wonder what that doc says about the timing. Dr. McCormick says, in his book "Great Bones" (page 559) to follow Evenity with either Prolia or Reclast immediately to avoid bone "resorption rebound."

REPLY
1 reply
sal462 | @sal462 | Jul 25, 2023
In reply to @estaban "I tried Evenity and since the first infusion in April of 2023 my life's been a..." + (show)
@estaban

I tried Evenity and since the first infusion in April of 2023 my life's been a mess. First side effect was insomnia. Couldn't sleep for more than 3 hours at a time. As the time for the next injection neared, the insomnia eased up but was right back after the shot. This time accompanied by lack of energy and a feeling of not being well. But I hung in there. After the third shot, my a-fib, which I had before beginning Evenity and was told not to be concerned about got worse, along with light headedness and low blood pressure. My eyes began to swell in the morning. All these symptoms were reported to my doctor who assured me they were not caused by Evenity. No one reported symptoms like this in clinical trials. Then I checked the clinical trials and made an appointment with my cardiologist who compared the EKG he did before starting Evenity with the one he did that day. So now I'm hooked up to a heart monitor because something not good is happening to my heart. If I had my choice of continuing to live like this just so I might be able to ski one day or get back to normalcy in my life, I sure wouldn't choose skiing.

Jump to this post

That’s so funny, well not haha but ironic - the first thing about this that I hated was skiing and roller blading being taken away, ice skating too but I only did that once a year or so. Not t mention ever getting back on a horse. At first an ortho said I could ski because it wasn’t that bad, then two years later it was worse. He says ‘ you can ski just don’t fall.” And this guy got thru med school. But to me the worse tho g is from a PT, who says if you ski you shouldn’t twist, just long backed turns. My goal has always been perfect short turns. But the irony is my doctor’s last attempt to get me on Evenity was “so you can ski again.” So far I’ve just been too scared, the black box and dental risks just too great. What I hate tho is that not skiing doesn’t cure osteoporosis, we could still twist the wrong way and break something anyhow.

REPLY
windyshores | @windyshores | Jul 25, 2023
In reply to @sal462 "I hope that weights work for you. I am still trying to avoid Evenity altogether (..." + (show)
@sal462

I hope that weights work for you. I am still trying to avoid Evenity altogether ( much to my doctor’s dismay) because I can’t see a future free of various dental procedures & the jaw necrosis risk plus the black box about the heart attacks just freaked me out. So I most of the time do some weights, maybe not enough but I am good about wearing a weighted vest while walking or other exercises. I think mine is the NYK one. It at least gives hope. I hate that they want us to take all these drugs.

Jump to this post

@sal462 have you tried Tymlos or Forteo?

REPLY
1 reply
betsee | @betsee | Jul 25, 2023
In reply to @windyshores "@lashu you can transition to Reclast after Evenity, and with monitoring we may be able to..." + (show)
@windyshores

@lashu you can transition to Reclast after Evenity, and with monitoring we may be able to take a break after one or two infusions. In our 80's Prolia might be okay, depending on our life span- according to my doc.

Jump to this post

How soon did you start Reclast after last Evenity injection?
Any advice beyond hydration & Tylenol?

REPLY
1 reply
windyshores | @windyshores | Jul 25, 2023
In reply to @betsee "How soon did you start Reclast after last Evenity injection? Any advice beyond hydration & Tylenol?" + (show)
@betsee

How soon did you start Reclast after last Evenity injection?
Any advice beyond hydration & Tylenol?

Jump to this post

@betsee I have not done Evenity. Dr. McCormick in "Great Bones" writes to do Reclast immediately after the year on Evenity is up. So that sounds like a month after the last injection but ask your doc.

Hydration, Tylenol and a slow infusion. The doc can order a slow infusion but he told me to remind them. My doc is doing a 20% dose as a test dose because I am so sensitive to everything and my kidneys aren't great.

REPLY
betsee | @betsee | Jul 25, 2023
In reply to @windyshores "@betsee sounds like the doctor in another state is a good doc! I wonder what that..." + (show)
@windyshores

@betsee sounds like the doctor in another state is a good doc! I wonder what that doc says about the timing. Dr. McCormick says, in his book "Great Bones" (page 559) to follow Evenity with either Prolia or Reclast immediately to avoid bone "resorption rebound."

Jump to this post

Yikes, immediately might be difficult. Amgen website says Prolia one month +/- 7 days, so I assumed Reclast was the same.

Infusion center likely needs to get insurance approval, but I’ll push them to get me in ASAP.

I have some bloodwork to do prior to infusion.

Reclast protocol:
1. Reclast injection must be administered as an intravenous infusion over no less than 15 minutes. I’ll ask them to do a SLOW infusion. Thank you for the suggestion.
2. Intravenous infusion should be followed by a 10 mL normal saline flush of the intravenous line.
3. Somewhere I read ‘infuse 0.9% sodium chloride at 500 mL/he for 15 minutes’ prior AND after infusion. This seems to be equivalent to 8 ounces of fluid prior and after infusion.

Not sure if I can make it through Good Bones, as this is happening quickly. I did watch a lecture you posted with a Mass General (?) physician. This led me away from Prolia due to consequences of discontinuation - FREEDOM study & vertebral fractures.

Thanks so much for the wealth of knowledge you have shared with me and others.

REPLY
1 reply
windyshores | @windyshores | Jul 25, 2023
In reply to @betsee "Yikes, immediately might be difficult. Amgen website says Prolia one month +/- 7 days, so I..." + (show)
@betsee

Yikes, immediately might be difficult. Amgen website says Prolia one month +/- 7 days, so I assumed Reclast was the same.

Infusion center likely needs to get insurance approval, but I’ll push them to get me in ASAP.

I have some bloodwork to do prior to infusion.

Reclast protocol:
1. Reclast injection must be administered as an intravenous infusion over no less than 15 minutes. I’ll ask them to do a SLOW infusion. Thank you for the suggestion.
2. Intravenous infusion should be followed by a 10 mL normal saline flush of the intravenous line.
3. Somewhere I read ‘infuse 0.9% sodium chloride at 500 mL/he for 15 minutes’ prior AND after infusion. This seems to be equivalent to 8 ounces of fluid prior and after infusion.

Not sure if I can make it through Good Bones, as this is happening quickly. I did watch a lecture you posted with a Mass General (?) physician. This led me away from Prolia due to consequences of discontinuation - FREEDOM study & vertebral fractures.

Thanks so much for the wealth of knowledge you have shared with me and others.

Jump to this post

Just to clarify- sorry for being unclear- McCormick says to do Reclast immediately after the year on Evenity so I guess this would be one month after the last injection. Check with your doc on this!

I asked about getting IV hydration before the Reclast infusion and my doc said drinking was just as effective.

Glad you watched Dr. Leder's video! It covers the same ground as Dr. McCormick's book so you're good!

REPLY
1 reply
debcco | @debcco | Jul 26, 2023
In reply to @betsee "Hello, How soon after 12th Evenity did you receive Reclast infusion? Doctor recommended Prolia, so I..." + (show)
@betsee

Hello,
How soon after 12th Evenity did you receive Reclast infusion?

Doctor recommended Prolia, so I reached out to prior doctor in another state for his insight.

After reviewing by labs and DEXA, he had a preference for Reclast. After a bit of procrastination on my part, and a message through the patient portal, I am on track for Reclast. Just couldn’t get beyond the bone resorption of Prolia, should it need to be discontinued.

Now I want to get some info on timeframe for infusion. Hydration and Tylenol seem to be mentioned quite a bit on this site.

Thank you for any info you can provide.

Jump to this post

I had my infusion a couple of weeks after finishing Evenity. The person who administered it said nothing about hydration. It seems the Reclast triggered a flare of my autoimmune disease (a very rare form of colitis) and I am still trying to get my gut back in balance after almost 2 months. I am going to work hard with weights and exercise to prevent loss of the new bone; no more Reclast for me.

REPLY
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